The Value of Openness: The PatientsLikeMe Blog

It’s been an exciting few months for PatientsLikeMe.  Here’s a quick recap…

Today, Fast Company released its annual  ranking of the 50 Most Innovative Companies in the World.  PatientsLikeMe made #23 on the list alongside big league companies like Facebook, Disney, Novartis and Amazon.  PatientsLikeMe was also named the second most innovative company in healthcare, behind powerhouse General Electric (GE).  Read our news release about it here and the magazine article featuring one of our MS patients. To commemorate this honor, we’ve interviewed our President and Co-founder, Ben Heywood, in our first-ever PatientsLikeMe podcast (hosted by our own Aaron Fleishman).  Listen in!

Speaking of innovation, what do Bill Gates, Al Gore, Steven Hawking, Goldie Hawn, David Blaine and PatientsLikeMe Co-founder Jamie Heywood have in common? All of these innovators have graced the stage at a TED event. A nonprofit that brings together innovative people from “Technology, Entertainment and Design,” TED’s mission is to simply spread ideas.  Isn’t that another way of saying “share?”  We do love that concept.  Here’s Jamie at TEDMED (the healthcare-focused TED event) sharing our vision on the future of medicine in his presentation, “The Big Idea My Brother Inspired.”

Finally, we’d like to give a shout out to some of people who have interviewed us since the start of 2010.  In the February 8th issue of TIME magazine (“Group Therapy”), reporter Bonnie Rochman caught up with Jamie to get his perspective on the power of online patient communities. Later that same week, Ben Heywood sat down with Staci and Steve from WAAM’s My Great Kid Radio show to discuss sharing, openness and the remarkable power of technology.   He also spoke with Ryan McBride from Xconomy about the growth of PatientsLikeMe as a business, so be sure to check it out.  Lastly, we just posted a blog interview with reporter and author Thomas Goetz regarding his newly released book, “The Decision Tree” (featuring PatientsLikeMe and our community members).

Stay tuned for more 2010 interviews, announcements, and podcasts right here on our blog.

Today’s news release announcing acquisition of ReliefInsite.  Want to receive future announcements?  Sign up for our RSS feed on the press page.

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FOR IMMEDIATE RELEASE

PATIENTSLIKEME ACQUIRES ONLINE PAIN MANAGEMENT COMPANY, RELIEFINSITE
20,000 Patients Reporting Moderate to Severe Pain on PatientsLikeMe

Cambridge, MA and New York City, NY - February 16, 2010 - Today, PatientsLikeMe, the leading online community for patients with life-changing diseases, announces the acquisition of ReliefInsite, a pioneering online pain management company.

“Right now, there are more than 20,000 patients on PatientsLikeMe experiencing real pain,” says Ben Heywood, President and Co-founder of PatientsLikeMe.  “By acquiring ReliefInsite, we can improve the way we help patients effectively manage their pain.”

Conceived by founder Fred Eberlein in 2000, ReliefInsite’s patented online pain management technology developed into a secure HIPAA-compliant platform designed to help patients monitor their pain levels and share that information directly with their doctors.

“I’ve spent more than a decade inventing and advancing the technology platform at ReliefInsite to help patients manage their pain and improve the patient-doctor relationship,” says Eberlein.  “I’m excited this work has led me to my new home at PatientsLikeMe, where we can work together to better align industry’s interests with improving patients’ quality of life.”

ReliefInsite will continue to support its existing pharmaceutical and clinical clients as its functionality is integrated into the PatientsLikeMe platform. Eberlein joins the PatientsLikeMe team to lead the companies’ integration and enhance product offerings for partners in the life sciences industry.

Pain is a common symptom for people with all of the diseases on PatientsLikeMe, and is most prevalent in diseases like fibromyalgia and multiple sclerosis. In the depression community, thousands of patients report they are currently experiencing “back pain” or “stomach pain,” with 50% of those members describing their pain as moderate or severe. Across all of the disease communities, pain is a topic of discussion in more than 61,000 forum posts. Additionally, patients are using hundreds of treatment options to manage their pain from prescription medications, such as Cymbalta and Lyrica, to alternative solutions like acupuncture, massage and physical therapy.

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Pharmaceutical, Social Media Leaders Examine Real-World Impact of Epilepsy

CAMBRIDGE, MA and ATLANTA, GA — (Marketwire - January 26, 2010) –  Today, PatientsLikeMe, the leading online community for people with life-changing conditions, and biopharmaceutical company UCB open the doors to a free online community for people living with epilepsy in the U.S. Focused on learning from patients’ real-world experiences, the online community allows members to create profiles that record and share their treatments, symptoms, as well as seizure type, frequency and severity.

“As a patient-centered company, we are constantly seeking innovative ways to enhance and adjust our approaches to meet patient needs,” says Iris Loew-Friedrich, Executive Vice-President, Chief Medical Officer, UCB. “We believe this community will be a source of information that will allow us to better understand people living with epilepsy and may help us design clinical programs that incorporate real-world patient needs and experiences in a measurable way.”

Among the research being conducted, PatientsLikeMe and UCB are analyzing anonymized data shared by participating epilepsy patients, with their consent, via an online clinical survey built into the site to measure patients’ quality of life (including cognitive, social and physical function). Completed by 60 patients testing the site since mid-November, initial survey results show the patients are most concerned with the cognitive impact of living with epilepsy (such as lack of concentration or memory loss).

Adds Ben Heywood, co-founder and president of PatientsLikeMe, “Patients are telling us that, in addition to seizures, there are many more significant aspects to the disease. It’s this type of real-world data and insight about epilepsy that is going to change how this disease is treated.”

To better understand the impact of medications that treat epilepsy in the real world, PatientsLikeMe and UCB are also taking the lead in implementing a drug safety program within this patient community. The program is designed to capture and report adverse events associated with approved UCB epilepsy therapies to the U.S. Food and Drug Administration (FDA).

Last June, PatientsLikeMe and UCB announced this strategic partnership to build an online community for people living with epilepsy, which debuts today at www.patientslikeme.com/epilepsy/community.

You can see the full news release from PatientsLikeMe and UCB on Marketwire.

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ‘09:

“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ‘09:

• Partnerships: Earlier 2009, PatientsLikeMe announced partnerships with biopharma leader UCB to launch an epilepsy community next year and personal genomics company 23andMe to help people with Parkinson’s.

• Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.”  PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June.  Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.

• Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.

• Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
- The PatientsLikeMe Team

Ben Heywood is speaking at The National Summit in Detroit today, and was invited on Fox Business Live to talk about the patient influence on the future of health care.  Here is the segment with anchor Alexis Glick.

A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard.  It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S.  In the world of Health 2.0, we have a lot of great opportunities to impact healthcare in a positive way, including shaking things up and putting patients back at the center.  With so many new and promising companies emerging in the space (many in attendance at the Boston event), we have to start thinking about what happens next.  How can we really make change, and what changes need to be made?

I believe we, as the eHealth community, need to focus on two major goals:  1) solve patients’ problems, and 2) create business models that allow us to do #1.  The PatientsLikeMe business model is straightforward.  We build online communities where patients share structured information about their disease to help themselves and others.  In turn, we make money by selling that data.  We are open with our patients about how and why we sell this data (and specifically what data we sell).  They understand this exchange and they’re all for it. “Sell, sell, sell” someone recently wrote in a discussion about our business model.  Why?  Because they know our goal in selling is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients.  We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients.

I don’t want to prognosticate about what types of business models will work for all Health 2.0 companies as the industry evolves (because, ultimately, this is an evolution).  It’s up to each company to figure that out.  I do believe that there’s no wrong path when you keep both those goals in your sights.  Help patients, and create business models to do that.  Moving forward as a company and as an industry, that’s exactly what we need to do.  Now let’s get back to work…

Last Friday (September 26, 2008), our Co-founder and President, Ben Heywood, was honored at the Boston Business Journal “Champions in Healthcare” award ceremony. Ben was one of two recipients recognized in the Innovation category. These regional awards highlight outstanding individuals and companies from the Boston-area who are making a difference in healthcare, including winners across five categories (Administrators, Community Outreach, Employers, Innovators, Nursing and Physicians).  Here is the full list of honorees.

Held at the Charles Hotel in Cambridge, the event was kicked off with a keynote address by Harvard Medical School’s Dr. Leonard Zon, an internationally recognized pioneer in the fields of stem cell biology and cancer genetics.  Next, Boston Business Journal’s Editor, George Donnelly, and Lisa Vanderpool presented each honoree with an engraved, crystal award in front of a room full of colleagues, family members and friends.  The winners were also profiled in a special edition of the paper last month (August 15, 2008).

It’s truly an honor for our company to be spotlighted in this way, particularly in our own “backyard,” which happens to be populated with some of the best and brightest healthcare professionals and companies around.  In his thank-you remarks, Ben touched upon his personal experiences that has brought him here, and thanked his team and the community.  He said it best -  “I share this award with the other two co-founders, my brother Jamie and our friend Jeff Cole, and our incredible team…Last but not least, I have to thank the patients.  Without them, we wouldn’t be here.”